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Hi, I am new to this group and very pleased to be participating. On November 22, 2022, I had a tongue, right, partial glossectomy and right neck dissection. My doctor said she removed all of the cancer tumor from my tongue and waiting on the results of the biopsy from the 26 lymph nodes removed from my neck. Last week I got the call from my doctor telling me there were no signs of spreading to my neck and everything looked good. However, she said as an "icing on the cake" preventative measure of cancer recurrence she wanted me to consult with a radiologist. She said the tumor was localized to the tongue but because of the mass of the tumor it put my cancer at a stage 3. She said anytime they are dealing with a stage 3 cancer they recommend radiation treatments. I asked her what the percentage of recurrence was not doing the radiation and she said 20-30%. Doing the radiation, she said 10-15%. Currently I am feeling good, my tongue is finally healing nicely and the best it has felt in 4 months. I'm eating up a storm and putting some of the weight back on that I lost from the surgery. I am very active and in pretty good health with all of my teeth for a 67-year-old, normally 137 lb. (130 lb. and gaining) man. From what I have been reading and asking around I have heard some nasty things about radiation in the oral cavity. One dentist told me, "Radiation is very tough on the mouth. Pain, loss of saliva, dry mouth, loss of teeth, loss of taste." "Do your research as you always do!" he told me. To be honest, now I am scared to death and pretty well stressed out over this decision I need to make. I certainly owe it to myself to consult with the radiologist to see what's involved in which I have an appointment for next Tuesday. I am already having my doubts whether I am willing to go through with this especially knowing I still have a 10-15% chance of recurrence after going through the radiation. Maybe this post was a little too premature without first talking to the radiologist, but I felt I needed to get it off my chest and could possibly benefit from information provided beforehand by this group. I would appreciate any feedback this group could provide. Thanks in advance.

Last edited by glenn347; 01-07-2023 12:57 PM.

glenn
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Hi Glenn,

Welcome to the forum. You will find tons of good info and many helpful people here. Congrats on getting through the surgery and clean margins. Both big steps and huge to getting back to living life to the fullest. I had the same surgery in 2020. I was stage 4. They found cancer in one node but still inside the node. I was also told radiation would reduce my recurrence by half which was ultimately worth it for me.

Radiation was a difficult path. For me surgery was more intense but recovery and improvement was seen almost daily. Radiation was a slow burn and recovery takes months and years. In fact, the tooth and gum damage will continue probably through life but my issues have started to slow down. I have had many cavities, crowns, and root canals since rads. Food and flavor issues are still stabilizing nearly 3 years later but I can eat almost anything now just not too spicy. The loss of saliva (about half normal) is permanent. Everything you heard is correct.

Even with the benefit of hindsight, I would make the same decision. Keep doing your research, your mind and heart will eventually align on this decision. Keep us up to date.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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HI Nels,
Thank you for sharing the review of your surgery and radiation treatments. Every bit of information helps. I had the consultation with the radiologist today. He was up front with me and said without the radiation I had a 50% chance of recurrence and with the radiation I had a 15% chance of recurrence. He also mentioned chemotherapy. I can't help thinking about the post here from muddyb00ts and the way that ended up after radiation. I understand it can go either way and everyone is different in what they can tolerate and expect out of quality of life. He wants me to have a PET Scan and that is scheduled for Friday. I have a follow up appointment with my doctor that did my surgery on the 30th. I'm going to wait until I meet with my doctor and discuss with her before making any decisions. In the meantime, I'm going to search here for member's posts that decided not to do the radiation. I would like to hear both sides. I'll keep the group posted.


glenn
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Glenn

Good point, we all respond differently to these treatments. I must say I am a little surprised (based on what i read on here and my experience only) they brought up chemo seeing that your margins were clean and nothing in the lymph nodes. But, each doctor thinks differently, and i am no doctor!

Looking forward to hearing more. Stay safe and keep the faith.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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